Living with dementia

Personal experiences of living with dementia

As a caregiver, I felt as I wanted to write down my thoughts and my feelings concerning this cruel experience we are living. By the way, my name is Ramona Amariei, I am 28 years old and I’m from Bucharest, Romania.

Why ... us? I’m still asking myself even if there has been already four years from the first signs of the disease and three years since my mother was diagnosed with Alzheimer dementia.

This happened when she retired, perhaps in that moment, I think, when she felt alone, far away from her social life, from her clients, from the dynamic part of her life. I have to say that for my mother her job was very important, so important that when she stopped going to work she felt isolated from the outside world.

In a way, my mother was forced to retire because she worked as a hairdresser in a hair salon which closed. She refused to get hired in another hair salon and she accepted the idea of retirement at the beginning, but afterwards she reconsidered and changed her mind, but it was too late, her request of retirement had already been accepted.

In that moment I felt her to be both disappointed and affected. She felt like it was the end. However I would have tried to convince her that she’s got all the time in the world to walk, to read, to go shopping, to cook different specialities ... but it was useless. I realised that all these activities I enjoyed, my mum disliked.

She was saying to me that she had no money to buy everything she wanted and I realised that this issue concerning “money” started to become an obsession for her and very soon she refused to touch it. She was saying to my dad that she couldn’t remember clearly what had happened two or three days ago, but we didn’t pay any attention and we supposed she was tired.

In all this period, my mum started to be more and more absent in conversations, to avoid telephone conversations, to refuse to go out alone and what really shocked me was her look that showed no feeling; neither angry, nor love. She looked empty, she was sad all the time and there was no smile on her face.

She was asking me how to cut the bread or if it’s good how she chops the onions and the carrots. At the beginning, I thought she didn’t want to concentrate enough to do her habitual activities and I was nagging her sometimes. Then, reading more about this disease, I realised that even if she wanted so, she couldn’t do that. And I learnt that I had to show her every time how to cut the bread or to chop the onion and every time I had to encourage her as she was like a child and trying to make my tears stop.

I kept asking myself and, if it was possible, to get some answer: How could that be possible? She taught me how to cut the bread, to chop the onion and now....? But in time, unfortunately, all this became normal.

This disease changed her completely and also our lives, mine and my father’s. My dad had to give up to his job to take care of her. We had to learn how to treat her in her different states. She has moments when she behaves normally and she remembers what she has to do and also moments when she is completely lost and she needs help.

There are moments when she starts crying as a child and even if we ask her what is going on, she can’t answer and we feel useless. But we go on with our fight of keeping her knowledge and memories alive in order to be with us as long as possible.

We are afraid of the moment when she won’t recognise us and we will be completely useless in her life. We feel really sad because instead of talking to me and my dad, she lies in bed watching the ceiling having the same empty look.

We live day by day, enjoying her small successes, being sad when she forgets something, smiling when she acts like a child. But, the most important is that we still feel her huge love she has for us and this remained untouchable by the disease.

And even we learnt to live like this and enjoy our life, I’m still asking myself why…. us?